Do you know a young caregiver?
The only national survey of young caregivers conducted in the United States was completed in 2004. Conducted by the National Alliance for Caregiving and the United Hospital Fund, they found there were about 1.3 – 1.4 million young caregivers. Divided into age groups of 8-11, 12-15 and 16-18, we are talking about children in elementary school, middle school and high school caring for parents, grandparents, siblings or other relatives.
Despite this landmark study, the 2004 numbers had to underestimate the number of children serving as caregivers. Under reporting is a natural assumption because parents had to agree to their child being interviewed and only English-speaking parents were asked to participate.
I suspect for families with limited resources, the growing trend of hospitals sending patients home after shorter stays means the number of caregiving youth continues to grow.
What about our veterans, Moms and Dad’s that return home with PTSD, traumatic brain injuries and as amputees? According to research conducted in 2014 by the Elizabeth Dole Foundation, post 9/11 military caregivers differ from other caregivers in that “they tend to be younger, caring for an individual with a mental health or substance use condition, employed and not connected to a support network.” The statement, “they tend to be younger” makes me wonder how many young children in the home are helping to full fill the role of caregiver.
Then there is the current opioid crisis which has reached epidemic proportions. We don’t have a handle on the number of children who are caregivers for younger siblings because of parental addictions. Nor do we have a handle on the number of aging grandparents who have taken responsibility for their grandchildren and who will soon need care themselves. But a recent report points out that little attention is being paid to the ripple effects of the opioid crisis on children and adolescents whose parents or close family members are addicted.
For some caregiving youth, this experience draws them to professions like nursing or physical therapy, others struggle. The opioid crises helps expose hidden problems of youths becoming caregivers.
Let’s be clear, when we talk about the tasks of caregiving youth, we are not talking about taking out the garbage or cleaning their room. We are talking about helping loved ones dress, toilet, blow their nose, administer medications, help to range (move) arms and legs for people who cannot, prepare a feeding tube, hook it up and administer so the person they love gets the nutrition they need. These children grow up quickly, childhood is lost, and they deal with the aftermath their entire life.
It should not be a surprise that on top of all the normal stuff kids deal with today, caregiving adds additional stress. You miss school to help at home, you can’t go out with your friends, participate in sports or get a part-time job. Your life is different. You can’t explain it or tell a peer that you prepared your mother’s feeding tube. Most young caregivers have no idea they are not the only ones going through this experience. Caring for a parent or grandparent is truly a role reversal and the results are that these caregiving children do not feel like normal kids.
I struggled to find resources for young caregivers. Not even the normal educational and faith community channels were helpful. Most still put the onus on the child or their ill loved one to reach out for help. We must do better, recognize the signs and reach out to the child with helpful resources.
If you are lucky enough to live in Palm Beach County Florida, there is the American Association of Caregiving Youth, Connie Siskowski, RN, PhD, is the founder. AACY is the first organization in the U.S. devoted to the issues of caregiving youth. In 2006, with the use of grant monies, they launched a caregiving youth project that now encompasses 26 schools in the county. The program starts in 6th grade and goes through high school graduation. It is designed to offer young caregivers a range of support in school and at home.
The other organization is Hope Loves Company (HLC). HLC is the only non-profit in the U.S with the mission of providing educational and emotional support to children or young adults who had or have a loved one battling Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. Hope Loves Company runs weekend camps in MA, IL, FL, CA, IN and NJ for these children and young adults, holds classroom seminars, sends Hugs of Hope care packages, and sends free books to these children among other things. If you want to truly understand the impact of this disease and what being a young caregiver means, here is a link to the Hope Loves Company Documentary.
The Elizabeth Dole Foundation empowers, supports and honors the 5.5 million military caregivers. They are involved in comprehensive advocacy work. HiddenHeroes.org comes out of the foundation and is a website that has a vetted directory of valuable resources in addition to the personal stories of military caregivers.
If you know a young caregiver, the following suggestions for reaching out are from Caregiver.org:
- Family members and friends can be resources for sharing caregiving duties while youth are at school, as well as giving young caregivers a trusted individual to talk to when their parent may not be available.
- School guidance counselors may be able to offer information on any special programs for youth caregivers.
- By talking to educators, like a trusted teacher, about your home life, you may find flexibility in assignments and support to help you succeed at school in the face of adversity.
- Local chapters of national organizations, such as the MS Society or the Alzheimer’s Association, may be of assistance in providing links to youth caregiving support groups.
- Local social service agencies may be able to help with financial assistance for in-home care or provide links to emotional support resources for the whole family.
What more can we do to uplift and help young caregivers? I’m open to suggestions. Please leave your comments below.
With thanks to Jodi O’Donnell-Ames founder and Community Outreach Director of Hope Loves Company for the Hope Loves Company Documentary where brave and strong young caregivers share their stories allowing me to give you insight into their journey.
Washington Post Article: Children process grief differently than adults here’s what parents need to know.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.